CF Clinic

Here's a quick recap of my appointment yesterday.

I started feeling a cold, extra tingly cough coming on Monday that slowly increased throughout the week. I was worried about what that might show for my lung function because my lungs were getting tight. And now this morning I'm feeling worse than I did yesterday, and I'm really looking forward to the weekend to relax, shake extra, and maybe even get in a nap.

I got to my appointment about ten minutes early, but didn't get called back to a room until about half an hour after my appointment time. Oh well, I had time to scroll through FB and relax after the long drive. The took me back to get my weight (134.9lbs) and then to the room. The people who cleaned it were just walking out and the cleaner smell was SO strong. They asked if I wanted to wait in the waiting room for 5 more minutes while it aired out and I definitely said yes. So, five minutes later she brought me back to the room and it was much better. Someone came in to do my vitals (100% O2 level and blood pressure was fine). Then came the PFTs...

I always get a little bit nervous before doing them because it's basically the whole reason I'm there. It guides the rest of my appointment and tells how my lungs are holding up. My last visit was very disappointing when I had a huge drop and was down to 81%. I was hoping to be a few points higher than that today because I had been feeling excellent until this week, so I was worried that my tight lungs would skew the results. My first blow was pretty good, and when I looked at the screen I saw 86%! I said, "Yes!" and then coughed my brains out for a little bit. Once I got everything out, I did the test again and got an 83...not too bad, but I was getting tired and tight. I coughed a bit more until I felt clear again, then went for a third test. Same result - 83. I could tell the last two were lower because of the way I was feeling, so thankfully they took the first test as my best one. :)

So even with this cold beginning, my lung function has gone up at least 5% over the last couple months. I am very happy with that. I think the combination of being healthier, doing all of my treatments, and joining my running group has definitely contributed to that increase. I'm a little worried I'm going to lose a bit of it by the way I'm feeling this morning, but hopefully I'll fight this nasty bug off soon.

Thankfully, I'm at a very healthy weight so I have some back up pounds to help me get over this cold. As a person with CF, it's always been very hard for me to gain weight, and it's always come off very easily, which was not fun! My body is going to be working extra hard over the next few days to fight this cold, which burns more energy and calories. So I'm glad and lucky to have that extra weight, so that if I did lose a few pounds, I'm still within a healthy range. The unfortunate part of being at the heaviest weight I've ever been is my belly. Oh the dreaded CF belly.....I posted about it several years ago when I thought I was at my highest weight (about ten pounds lighter than I am today - thanks Kalydeco). It's very common in the CF community to have a belly. It's the way our bodies are built and I don't think people who are not familiar with CF understand it. Yes, I look pregnant, but it's all CF belly. That's where I gain my weight (and in my face) and I also have a distended belly because of my digestion issues. CF patients frequently have bowel/digestion issues, extra gas and bloating which all shows in that area....just an extra lovely perk of the disease. So for those of you who keep looking at me funny...please stop. :)

Overall, I had a great appointment. The doctor was very please with my increase in weight and lung function. She wants me to up my treatments to help kick this cold or whatever is developing. Hopefully it'll disappear by next weekend when I'm running in the Turkey Trot! I'll go back in January for a follow-up (she said unless the weather is bad, then we can wait til February).

Never In A Million Years

Never in a million years did I think I would be posting about something like this and posting pictures. But it's something that I've had to deal with my whole life, especially more so over the past few years as I've gained weight. Don't get me wrong, as a CFer, I'm supposed to have a healthy weight, so gaining weight is encouraged, but it's hard when I don't like the way it looks. What am I talking about? My lovely CF belly! If you know me, you know what I'm talking about and I'm sure you've seen it. I thought it was just the way I was built until I joined CysticLife and realized it's a CF thing....awesome, thanks CF.

I was always underweight in high school and before, but when I went to college, I started steadily gaining weight. For CFers, it's hard for us to absorb fats/nutrients from our food, so it's hard to gain/maintain our weight. When I started gaining, my doctors were very pleased, but I was not. It was hard as a college student to start gaining weight, and noticing it physically, but I knew I had to do it to be healthy. I'm now at a healthy weight that both the doctors and I are pleased with, but it's still always in the back of my mind that my belly sticks out. Plus, I have three scars on my stomach from a surgery when I was born, so I feel like it gives a look of rolls...even better. It also doesn't help that I've got skinny little arms and legs, so I feel like it sticks out even more. Doesn't matter how much I've eaten, or not eaten, if I'm bloated or not, it's always there. In fact, last week at school I had a student ask me if I was pregnant -- not something I was happy to hear about, but oh well, gotta laugh it off. I can't wait to actually be pregnant so I have a reason to have a belly! I'm not posting all of this to say how I feel bad about myself, it's just another 'joy' of CF. So, without further ado...here are a couple lovely pictures of the infamous CF belly:

July 2010 - Lovely, huh? Doesn't help that I'm about
to eat an enormous amount of my birthday cake!

October 2010 - I hate that I have this picture because
it's from my wedding day, but that's what it looks like
when I'm relaxed. Plus I was at my heaviest
weight here (4 pounds more than today)

July 2011 - Taking a break from hiking

I want to thank Inhaling Hope (another CF blog I follow) for giving me the courage to create a post about this - read her blog about her CF belly here....see I'm not the only one! :-)